Featured Articles
Where to Stay When Away
The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair.
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Progress Now Summer 2016
Results from an MDA-supported multicenter phase 1b clinical trial have shown that treatment with pyrimethamine was safe and well-tolerated and associated with reduced levels of SOD1 protein in people with ALS caused by a mutation in the gene for SOD1.Pyrimethamine is a small molecule approved by the U.S. Food and Drug Administration for treatment in humans of the parasitic infections malaria and toxoplasmosis.
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Four Steps to Booking a Hotel Room for Wheelchair Users
As an avid traveler who happens to be a wheelchair user, I do my fair share of booking hotels. It's a complicated process that I've somewhat mastered over the years. While most people can just go online and book their ideal hotel in a matter of minutes, it's not quite that easy for us wheelchair users. I recently called a hotel to ask if they were accessible, and they told me that they certainly were.
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Living Unlimited Across America
This summer, MDA launched a new campaign called Live Unlimited that was inspired by the stories of individuals and families we serve. Together with our MDA community, we’ve challenged Americans to defy their limits — those we sometimes place on ourselves and those defined by others — and live life to the fullest.
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Earning Potential
Simon Cantos works hard at his job as an inside sales engineer for Carrier Corporation, a leading company in the heating, air conditioning and ventilation industry. “Engineering is extremely difficult, and I want to be compensated properly for what I do,” he says.Cantos, 33, who lives with Ullrich congenital muscular dystrophy (CMD), receives funding for dependent care from a state-sponsored program called Medical Assistance for Workers with Disabilities. He pays an out-of-pocket rate to stay in the program that provides funding for his personal care attendant to help with daily needs. The rate is based on a percentage of his salary and isn’t available once income thresholds are reached. Cantos says he is close to, but hasn’t yet exceeded, that ceiling.
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Quest Readership Survey: We Want to Hear From You
After listening to inspiring individuals with neuromuscular diseases and their families, the Muscular Dystrophy Association (MDA) launched a revitalized brand and new look for Quest Magazine in January 2016. We'd like to know what families think of Quest. Please take a few minutes to fill out the Quest Reader Survey and provide your feedback so we can continue to improve the information and resources we share in each issue.
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Seven Things Every New Mom Needs to Hear
Editor’s note: Read about Colleen Nichols’ experience of having a baby with a little help from technology in Love, Marriage, Science and a Baby Carriage. A college friend recently had her first baby, and after exchanging a few texts, I was reminded that there is a bit of new mom advice that every first-timer needs to hear. The days are long, and when you're unsure of what you're doing and experiencing, it's helpful to know that you're not the only one who thinks motherhood is hard.
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My First MDA Muscle Walk
To be honest, before the 2016 MDA Wichita Muscle Walk, I’d only donated to an organization seeking to find a cure for muscular dystrophy once. I’d grown up as the older sister of a wonderful, unique brother with congenital myotonic muscular dystrophy. Dustin was born when I was three, and I thought that he was just the way he was meant to be, and that I was lucky to have the brother I did.
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Love, Marriage, Science and a Baby Carriage
I’m not going to lie to you: Writing this article is making me sweat. I’m going to talk to you about a topic that changed my life in the most profound, positive way, but I still feel scared to share it. I was diagnosed with myotonic muscular dystrophy (MMD, or DM) when I was 20 years old. I had been dating my now-husband, Cory, for about a year, and I knew that he was the one. While I was head-over-heels and floating on cloud nine, I also struggled with a deep sense of dread and responsibility.
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All in the Family
Michelle Murphy, a marketing coordinator from Albany, N.Y., with myotonic muscular dystrophy (MMD, or DM), has been running for as long as she can remember. So when she was diagnosed with MMD in the summer of 2014, she began looking for ways she could use her passion for running to raise money to fight the disease.
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The Competitive Edge
Scott Hatley, 37, began playing adaptive sports soon after he was diagnosed with Duchenne muscular dystrophy (DMD) at age 4. He began with wheelchair basketball, playing with friends in his garage. From there, he went on to adaptive skiing, wheelchair rugby and a few other activities before finding his current passion, electric hockey. E-hockey relies on battery-powered carts that can zoom up to 10 mph and turn on a dime.
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